words & graphics by Emily Depasse
photos by Quartermoon Co.
Sex educator Emily Depasse of @sexelducation is redefining the narratives and negative stigma surrounding sexually transmitted infections (STI) while helping those who are struggling to conceptualize a life after diagnosis. She recently shared her genital herpes diagnosis story, statistics of Herpes Simplex (HSV), and the differences between HSV-1 (oral herpes) and HSV-2 (genital herpes).
Although it may not seem easy, healing, positivity, and self-empowerment are paramount to living a life beyond the herpes and STI stigma. Read below to better understand the mental health issues affected by a positive HSV diagnosis and learn how to support someone (including yourself) with herpes.
Feel Your Feelings
Until my diagnosis, I was unaware of the impact of herpes and STI stigma. I soon learned that sorting through the emotions attached to a positive diagnosis is a process. For six months, the stigma intervened between my self-education around herpes and understanding what my diagnosis meant for my future in life, sex, and love.
Sometimes it manifested as tears on my bedroom floor. But more often than not, it turned into reaching for another glass of wine and an email to my supervisor about missing another day at work.
You’re likely to be confronted with stigma in unsuspecting places. I remember the nurse who scolded me about safer sex practices over the phone. I remember the overwhelming feeling of dirtiness when a trainer at the gym unintentionally brushed against my shoulder. I remember crying in one of my favorite yoga classes as I shifted into downward facing dog. This is the power that herpes and STI stigma hold in our society. Cultivate arising emotions as a source of empowerment; hold patience for yourself as you begin to step into this unknown territory.
Find a Support System (That Works For You)
As I worked through my feelings around my positive diagnosis, I started to find peace in sharing my story with my friends. Whether it was by text, a phone call, or an in-person conversation, my friends met my disclosure with support and open-ears. For many, my diagnosis served as a realization of their own internalized stigmas. “I used to think only certain kinds of people got herpes--until you, Em,” shared one friend. Another shared that she contracted genital herpes from her long-term partner who had a cold sore. These conversations propelled our friendships to new levels of intimacy and even worked to challenge herpes stigma outside of my diagnosis. The impact these conversations have is often greater than the stigma itself.
If you are uncomfortable sharing your diagnosis with your friends, consider an online support group. On Instagram, @positive.results.us and @hsvinthecity hold online groups for wxmen and all genders several times each month.
Be Curious with the Resources You Consume
While standardized statistics, government guidelines, and agency pamphlets are great starter resources, they are limited in their delivery and often lack inclusivity. I see rising numbers of folks dedicated to understanding, discussing, and breaking the stigma, especially on Instagram. Be curious about the resources you consume, and don’t be afraid to ask questions. Who is this person’s audience? What is missing from the conversation? Do they talk about what’s missing? Are they projecting their experience as the only one? Is that experience a privileged one?
Courtney Brame, host of the Something Positive for Positive People (SPFPP) podcast and founder of the SPFPP nonprofit is one of my favorite (and most inclusive) resource recommendations for those working through a positive diagnosis. His podcast hosts over 100 interviews about overcoming the stigma, living life with herpes, dating and disclosure, addressing privilege, and more.
Doctors Don’t Know It All
Recently, researchers found that most medical students receive less than 10 hours of human sexuality training throughout their schooling. Knowledge around human sexuality is essential in providing patients with the appropriate care and guidance about their sexual health. For example, the CDC recommends mutual monogamy as a means to decrease the transmission of herpes. Prescribing monogamy as a method of STI prevention assumes that patients are monogamous and simultaneously ignores and devalues those in non-monogamous partnerships. Of similar importance is the lack of inclusive care and research around LGBTQ folks diagnosed with herpes.
Question your healthcare providers, but understand that, unfortunately, they may not have the information or appropriate care recommendations for you at this time. Personally, I believe that all healthcare offices would benefit by hiring sex educators to fill in the gaps in these and similar conversations.
Normalize Disclosure and Safer Sex Among Partners
Disclosure isn’t a one-way street. There is often pressure for HSV+ folks to disclose their status first, however, communicating about safer sex is a shared responsibility among all partners. Disclosure can happen in person or through digital means, but I caution that disclosing via text or dating app may increase chances for your disclosure to be screenshotted and shared with others without your consent. Instead of framing the conversation around your HSV+ status, open the conversation with, “When was your last STI test?” Or ask a more open-ended question like, “What do you know about STIs?” or “What does safer sex look like for you?” This framework removes some of the pressure and offers a more natural disclosure, and perhaps an opportunity to educate.
Share Your Top Three Resources
One of my favorite tips for disclosure is having a go-to list of resources to share with partners. Typically, I provide a resource from an organization or agency (the American Sexual Health Association), an article (something that resonates with you and your experience!), and a media source (Ella Dawson’s TEDx Talk). The benefit of disclosing via text is that these resources can directly be inserted into the conversation.
While you can expect your partners to have a few general questions, know that it is not your obligation to be their only resource. Recognize when you might need to set a boundary or remind your partners that you are neither your diagnosis nor the sole resource. For example, if the only conversations around sex revolve around how to avoid herpes, it might be time to chat or reevaluate the partnership.
There’s No One-Size-Fits-All Treatment
Herpes is not curable, but it is manageable. There are three (3) antivirals available for managing herpes: acyclovir (Zovirax), famciclovir (Famvir), and valacyclovir (Valtrex). Some doctors prescribe suppressive therapy, which means taking an antiviral each day. This method may be beneficial for those who have frequent outbreaks (recurrences) or those with discordant partners (meaning someone is HSV+ and their partner(s) are HSV-) since some antivirals reduce transmission between partners. Others may prescribe episodic therapy, meaning someone only takes antivirals when an outbreak arises or they sense it might be on the way (prodrome).
My use of antivirals has shifted with relationships and recurrences. ASHA’s website has a thorough overview of treatment methods and current research related to alternative therapies. Ultimately, the decision for managing herpes is up to you.
Create Time for Self-Care During Outbreaks
After my first outbreak in 2015 (known as the “primary outbreak), I remained largely asymptomatic until 2019 (fun fact: most people with herpes are unaware that they have it). Considering that this year has brought added emotional and professional stress, the fact that I’ve experienced an increase in outbreaks is unsurprising to me. For me, outbreaks serve as a reminder and a sign from my body that I need to slow down and dedicate extra time and space for myself.
If I’m experiencing an outbreak, or feel the tingling sensation of prodrome, I immediately prioritize sleep. Typically, this results in me swapping a morning workout for an added two hours of sleep. My second favorite outbreak ritual is taking baths. After finding the perfect temperature, I light several candles, add lavender Epsom salt and a few drops of Momotaro’s tonic, grab my beverage of choice and settle into my space. It’s the ultimate self-intimacy. After drying off, I also apply Momotaro’s salve if my outbreak is external (which they all have been this year).
Recognize When/If You Need Professional Support
Looking back at how I processed my diagnosis, I wish I made the decision to seek professional, therapeutic care. I was scared and ashamed. I thought about making an appointment, but the stigma told me that no one could or would understand. This is when I recognized the necessity for therapists to understand herpes and STI stigma. My experience drove and continues to drive my educational and career aspirations. Sex therapy has long been a career goal, but my herpes diagnosis created a new purpose.
If you are looking for a therapist to support you through your diagnosis, I recommend searching for a sex therapist in your area. Similar to medical professionals, not all therapists are open enough or equipped to discuss sexuality, sexual health, and related stigmas.
You’re Worthy of Sexual Pleasure
Sex post-diagnosis felt empty for a long time. I didn’t want to engage in self-touch or pleasure. I stuffed my sex toys under my bed and into a corner where they were inaccessible and out of sight. They served as a reminder of what I thought I wasn’t, and what I thought I no longer deserved.
With time, I realized that these actions and my internal thoughts were the results of herpes stigma. A positive diagnosis isn’t a consequence or indicator of your worth. A positive diagnosis is a normal, expected outcome of engaging in sexual activity.
We hope Emily’s suggestions give you the tools you may need to support the mental and physical effects of an HSV diagnosis or outbreak. Of course always reach out to us for support. Herpes is incredibly common, and we are always here for you.
Explore Emily’s Resilience Deck that offers positive affirmations to help move past the internalized stigma and external pressure associated with genital herpes and STIs in general. Learn more statistics and information about HSV-1 and HSV-2 here.